Category Archives: faith

One of my hobbies is photography: it’s just something I love to do. I had the great opportunity to join the photography team at my church as a volunteer, which I REALLY loved. It gave me an opportunity to have free reign of the place, to wander around and capture some great images. Of course, with the birth of the twins, all photography activities were on hold.

In February, however, I received an email from the photography coordinator that there was an upcoming event at our church mid-week called Code Orange Underground. This was an invite-only special event for church volunteers and leaders. The coolest part of it is that you never know what will happen that night, it’s always a surprise. Sometimes it’s guest speakers. Sometimes it’s bands. You never know. I talked with my wife and she said it would actually be a good idea for me to do it: I had the day off work (can’t remember why exactly) so I could go see Nolan much earlier than I usually do, and would have time in the evening to go to church. So I signed up and got the ok to shoot for the event.

I spent the earlier part of the day visiting Nolan, which was really nice: he was very happy and playing with some of the toys that the staff brought to him. At night I loaded up my equipment and headed for church, which was PACKED. I got there early for the sound check to find out that the surprise guest for the evening was none other than well-known worship leader Matt Redman! I was very excited because Matt wrote and performed a song called “Never Once” that has resonated so much with me before, during, and after Nolan was born. The lyrics say, “Never once did we ever walk alone, never once did you leave us on our own. You are faithful, God you are faithful.” TRUTH. And it was a truth I constantly needed when I was down or when things got tough. We sang it a lot in church and I was hoping he’d sing it that night. Here’s the song if you want to hear it: http://www.youtube.com/watch?v=722zPX1npcA

So the night was an awesome one, though there were way too many people there and a bit too many photographers. But I still enjoyed the opportunity to break from my little routine and do something I loved. And yes, Matt did perform “Never Once” and it was amazing…I just put the camera down and joined everyone else in worship. I was really blessed to be there. As a heart dad, I think it’s important to know your responsibilities, but it’s also important to remember that you’re only human. And you need to take some time to do the things you love, even though your life and your schedule will be crazy. If you ignore those things you will lose your mind and become just like your schedule: crazy.

One of the cool features of Nolan’s Progressive Care stay was the TV in the room. Sure, it had your standard remote/call button combo, but you could also plug it in to a keyboard and access movies, music, and websites. That was pretty dope, so I worked it into my visits with Nolan. I’d go to see him, turn on Pandora on the TV, and turn on the station for my church’s worship band: Elevation Worship. Then Nolan and I would sit in a rocking chair and just rock and listen to some worship music for hours. It would become the best part of my day by far. Most of the time Nolan would sleep, but sometimes he’d just look at me for long periods of time.

One day, though, things were different. It’s funny because there wasn’t anything inherently different about that day: I wasn’t having a bad day, I wasn’t bummed out about anything…it was just a regular day in the neighborhood. I had Nolan in my arms and we were rocking away in the chair. At one point I just looked at him: marveling at his big eyes and his cute little nose. And I whispered to him, “I love you so much, I would do anything for you.” Then BAM. He did it again, God decided to show up. Not physically show up, but more like make a PSA in my heart. You’ll remember from https://hlhsdad.wordpress.com/2013/11/03/dear-god-its-3am-im-scared-and-i-dont-like-you-right-now/ that God did the same thing when I was struggling before Nolan’s surgery.

Just like last time, the word was very still and quiet: “Now you see how much I love all of you, and you are all born broken.” WOW. And then – this is gonna sound weird – it’s like God gave me some kind of deep understanding of His love. You know, we all know John 3:16…we memorize it, we see it on signs at football games, people put it on business cards. But do we really know what it means for God to love with an overwhelming, totally-forgiving love? Like do we REALLY know what that means? I loved my son so much, I just wanted to pour out every bit of me to make him feel loved and whole, even though nothing I could do could make him whole. But in that instant God used that example to show me what His love was really like. All I can describe it as was heavy. Really, really heavy, like the vastness and greatness of His love was bearing down on my shoulders to where I couldn’t stand the presser and was overwhelmed. And that was just a glimpse.

And just like that, I was back in the rocking chair in Nolan’s room with him in my arms asleep. And on Pandora, the song “How He Loves” by John Mark McMillan came on. Almost as if right on cue. I was completely speechless. And overwhelmingly moved. I listened to the words of the song and played that whole experience over and over in my mind. Oh how we take God’s love for granted, especially since we’re all messed up: not always physically. I think no matter what we’re going through, we need to stop and really think about God’s love. About how much He loves us in spite of the abuse and rebelliousness we hurl at Him. His love is so strong and only He has the shoulders to bear it all. Thank you God for your love. Thank you for showing me your love in a hospital room. Thank you for showing me there’s so much more than what’s in front of me.

I know this far I’ve been chronicling our journey with Nolan, and I really thank you all for taking the time to read this blog. I hope that it’s given some of you heart dads an insight into the roller coaster ride that is being a heart parent. Hopefully for those who have gone through it, this blog shows that you’re not alone.

I wanted to take a small break in telling Nolan’s story to talk about being thankful, since tomorrow is Thanksgiving. Yes, it’s going to be a day where we eat ourselves into a coma, watch football, maybe put up a Christmas tree, maybe line up for Black Friday, etc. But as I look back on the last year with Nolan, I really have a lot to be thankful for: and when you really think about it, sometimes the thanks can seem a bit unusual.

While finding out early about Nolan’s condition was bordering on soul-crushing, I’m thankful it happened when it did. In some way I was able to educate myself and try my best to prepare (even though there’s no complete way to be prepared). There are a lot of babies that are born with congenital heart defects who aren’t so lucky. They’re born, look normal – just like Nolan – except they go home within a couple days. And that’s where the trouble starts and before you know it you end up back in the hospital…that is, if you’re so lucky. Many hospitals aren’t equipped to deal with CHD babies, much less recognize them. Heck, the hospital where we originally planned to have the twins doesn’t even have a NICU! So yes, I’m thankful we found out early: thank God for a ultrasound tech with good eyes and a cardiology team that is AMAZING.

I’m thankful for Levine Children’s Hospital: for the kindness showed to us by all the staff. For the bright colors and cheerful decor. Trust me, when you spend 2 months daily in a place, you notice that kinda stuff. I’m thankful for their volunteers, the doctors, the nurses, the CNAs. I’m thankful for the window washers who dressed up as superheros and rappelled down the building the brighten the kids’ day. A Children’s Hospital is definitely not a place you want to be by choice. We had to be there, and I honestly believe LCH is one of the best around.

I’m thankful for my wife, who often juggled so many schedules, complete with multiple pickups and drop-offs, just so we can go see Nolan at the hospital. She continues to be a rock and an amazing mom and wife. When I told people about this blog I heard a few stories about dads who abandoned their families once they found out about a CHD diagnosis. Those guys are cowards and they’re weak. Nothing less. I cannot imagine being a single parent going through this, so I’m grateful that I get to take this journey with my wife by my side.

Now for the crazy part. In some weird way I’m thankful for the fear, the rough emotions, the waiting, the meds, the sleepless nights, the nightmares, the anguish, the worry, the anger, the impatience, the doubt, the exhaustion, the crying….because it reminds me that there’s so much more to life than me and my comfort. I have a job to do and that’s to be a great husband and an awesome dad. Yes, I’m tired…and yes, sometimes I whine about it…but it’s all about perspective. Nolan is surviving and thriving and I thank God every day for it! There are kids and families that are worse off, that are going through tremendous struggles: they don’t know where their next meal will come from or where to call home. Perspective. It’s a powerful thing, and I’m thankful for it. I tell everyone that ever since Nolan was born, my life changed. I have to speak out for Nolan and other HLHS babies because that’s the life I’ve inherited and the life my son will live. And you have to learn to be thankful for every smile, every laugh, every breath, and every waking morning…because it’s the hard stuff that leads you to the great stuff.

Yes, the title of this entry seems a bit extreme, but it’s the God-honest truth, so hear me out. I personally feel like this entry is one of the most important ones in this whole journey because of what it represents, so don’t let the title scare you away.

Prior to arriving at CVICU with Nolan the day before his first surgery, I had gone through a lot in my head. I was sad when we found out about Nolan’s heart, I was scared, I was hopeful. Pretty much by this stage in the game, I was working really hard on having the faith that God would get Nolan – and us – through this. I remember sitting in this horribly uncomfortable rocking chair in Nolan’s room, with a pillow under my arm, and I had been holding my sweet Nolan for hours. We just hung out together: I talked to him, I hummed songs quietly to him, I prayed quietly…a lot. All in all, I was nervous but feeling pretty good. Then 3am came.

I know it was 3am because I remember looking at the time and thinking “Geez, 3am…3 hours to go.” Then it hit me: DOUBT. FEAR. As I sat in that chair the words from the heart surgeon boomed in my head: “20% of kids don’t make it through this part.” And I freaked. And then I got pissed at God. In my mind I was furious, I remember thinking “How DARE you, God? How dare you put us through this? Haven’t we been through enough? Why would you let me bond so well with him if there’s a chance I don’t ever see him again past tomorrow?” I was beside myself, I was shaking, trying to have this mental/verbal spar with God, all the while “20%” kept chanting in my head.

As soon as I said my peace, the doubts went away. And not faded away, it was like BAM, gone. Then this incredible peace came over me, it was almost warm. Then a voice came…not an audible one, but one that spoke to my heart and quoted Deuteronomy 31:6, “Be strong and courageous. Do not be afraid or terrified…For the Lord your God goes before you. He will never leave you nor forsake you.”

And that was it…

Wow. WOW. So here I was, broken down to nothing, having this toe-to-toe with God and God showed up and basically said “I got this.” I’m sure some of you will read this and think I’m nuts. That’s ok. Some of you will read this and thing it’s sacrilege to be so angry at God. That’s ok, too. But if you want my honest opinion, I think God’s ok with anger sometimes. Of course, it’s not ok to get angry and kill someone or anything like that, but this is different. Anger is an emotion all humans have…and God created us. I think in that moment, my 3am moment, I was trying SO hard to have strong faith, but I’m sure a lot of it was my own efforts instead of just trusting God. So I got angry…and by getting angry, it stripped away every wall, every pretense between me and God. So it was just me and Him, nothing else in the way. And He spoke.

Tony Evans once wrote something to the effect of “When you hit rock bottom, you find God is the rock at the bottom.” That’s for darn sure. So I knew from that point forward, “Be strong and courageous” needed to be the thing echoing in my head…not doubts. I was still a little scared, no doubt about it, but it was different this time. My faith had teeth. See, I think all I wanted was to be in control…until I was reminded that was impossible. Then God reminded me He’s in control.

So when is a time you broke down and were honest with God? Maybe you need to have that honest talk where you bare your soul honestly before him, whether that looks like anger or “Hey God, I just don’t get it.” Either way, do it. God is God, I doubt he’s gonna be offended by you. In my case he showed up BIG…I think if I didn’t have that moment, I would’ve missed out and would’ve been a TOTAL wreck during Nolan’s surgery and recovery.

Side note: thanks to everyone who’s been reading, following, and sharing this blog. My hope is that through sharing my journey with Nolan, that I can help people cope through their journey or learn about the journey they’re about to go through. Please feel free to comment whenever you like!